Thursday, November 27, 2014

Happy Thanksgiving!!

I sit here on this eve of Thanksgiving watching a marathon of Christmas light decorating on TLC. Not sure really where to go with this post. It may be one of those posts that is all over the place.

School started in August, and things really did not improve with Nick. He was still sleeping in class, and just not being his usual self. I also started back to school and things were busy around here.

At this point Nick was engaging in SIB sometimes over 100 times a day, not only was he sleeping in class, but would also sleep for 3-4hrs once he got home. He would just come right off the bus and go straight to the living room to lay down. Not even wanting a snack or drink.

In August, we also saw a specialist about one of his testicles being bigger than the other. She concluded that it was a hydrocele. We were scheduled for surgery Oct 2nd.

We made it through September, seeming to get used to this "new normal", but not liking it at all. This is a kid who was no longer participating much either in school or in life really. It was sad. A lot of the time his aide would come and Nick would be passed out, so we would have to re-schedule his hours. He started moving his hours to later in the evening when there would be a greater chance of Nick being awake.

Oct 1st I attended a meeting at Nick's school. This was unlike all of our previous meetings. We had people from the school district there, I brought our case worker and another mental health person, and some other people that I am sure I am forgetting. This was a meeting to talk about what to do. His school had done all the assessments they could think to do, he "failed" all of them. Meaning, they could not find any consistency in his behaviors. Hospitalization was talked about, but we wanted to wait until after he had his surgery to see if things improved. I think I cried all the way down Peach St. that day. No one wants to make this decision.

Oct 2nd comes and we take him in for the surgery. All goes well, but the doctor did tell us there was more involved than we all thought. She took care of the hydrocele, and while he was there, she went ahead and did a more thorough exam, since he was under anesthesia and not moving around constantly. She discovered he also had some penile adhesions, so those were also taken care of. Little guy was a trooper as always. We gave it a week or so to heal up and see what we were dealing with behavior wise after that. At the next meeting though, we put in the referral for him to go inpatient. But, also at that meeting, we decided to try one last medication. Since a lot of his symptoms also fit with depression, and we all thought that was a possibility, we tried Remeron. It was the last hope really.

I was at his school on Oct 31st. He had been on the new med for about 2 weeks. And suddenly it seemed he was making a nice turn around!! Everyone was excited to see the old Nick coming back!! He was participating!! Even initiating!! He was happy! They told me they were wanting to try getting him back to where he was before with things like playing, and doing tasks. Did I mention that he had also been declining 'academically'? Not making forward progress on his IEP goals? He was doing so good, that this was discussed and I was so happy. It seemed we finally had our boy back! While I was there, the inpatient unit called to say they had a bed available and ask if we wanted it. Everyone was so impressed with his dramatic progress that we ended up declining the bed. Unfortunately, in true Nick fashion, this was short lived.

So, here we are now, November 27th. He has been sleeping in school again, twitching, jerking, sudden aggression, etc. It is all back. We put in another referral for inpatient about 2 weeks ago, and it is just a matter of time now. Going from how long it was last time between the referral and getting the call, it should be the end of next week before we hear anything. The timing would actually work out for one. My semester is coming to an end, and would have more time to visit and attend meetings.

In other news, he had a great Halloween!!! The best yet really! He dressed up as a vampire and we took him out trick or treating. He stayed out for an entire hour!! It was wonderful!!!
Excuse the grainy Ipad photo.

I am also now part of a non-profit group in our town for autism support. We are just getting it started and have only had one meeting so far, but have another one planned for this weekend. Made new friends definitely. Can't wait to see where the group goes from here! Registered for next semester and slowly accomplishing all my required credits. I have discovered that I really enjoy working with the kiddos in Nick's school :) Well, that is pretty much everything that has been going on since I last wrote. Michael is in full teenager mode. 15 and moody. Trying to get him interested in something career wise. He has inquired to several colleges, and has expressed an interest in public health, so we will see. He was going through his own troubles earlier this semester, but with counseling he seems to be doing better. Hopefully things slow down next year?? I know I say that every year, but somehow we never get there. One day.

Just want to wish everyone a Happy Thanksgiving! Hope you and yours have a wonderful day tomorrow (or today? since it is after midnight here now). I better get to bed, mister wakes up early! Good night!!